Understanding and Measuring the Wellbeing of Carers of People With Dementia

Nicola A. Cunningham (Lead / Corresponding author), Tom R. Cunningham, Jane M. Roberston

    Research output: Contribution to journalReview articlepeer-review

    19 Citations (Scopus)
    163 Downloads (Pure)


    Background and Objectives: To determine how the wellbeing of carers of people with dementia is understood and measured in contemporary health research.

    Research Design and Methods: A systematic review of reviews was designed, registered with PROSPERO, and then conducted. This focused on systematic reviews of research literature published from 2010 onwards; with the wellbeing of carers of people with dementia being a primary focus. N = 19 studies met the inclusion criteria. Quality appraisal was conducted using the AMSTAR tool (2015). A narrative synthesis was conducted to explore how wellbeing is currently being understood and measured.

    Results: Contemporary health research most frequently conceptualizes wellbeing in the context of a loss-deficit model. Current healthcare research has not kept pace with wider discussions surrounding wellbeing which have become both more complex and more sophisticated. Relying on the loss-deficit model limits current research in understanding and measuring the lived experience of carers of people with dementia. There remains need for a clear and consistent measurement of wellbeing.

    Discussion and Implications: Without clear consensus, health professionals must be careful when using the term "wellbeing". To help inform healthcare policy and practice, we offer a starting point for a richer concept of wellbeing in the context of dementia that is multi-faceted to include positive dimensions of caregiving in addition to recognized aspects of burden. Standardized and robust measurements are needed to enhance research and there may be benefit from developing a more mixed, blended approach to measurement.

    Original languageEnglish
    Pages (from-to)e552-e564
    Number of pages13
    Issue number5
    Early online date16 Mar 2018
    Publication statusPublished - Oct 2019


    • Enriching caring
    • Social gerontology
    • Wellbeing

    ASJC Scopus subject areas

    • Gerontology
    • Geriatrics and Gerontology


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